Weekly Taxol for Stage 4
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@Aoibheann, do you have the option of changing to a different oncologist or seeing another doctor for a second opinion? I can't imagine why your doctor is refusing to treat your side effects. Maybe a different doctor would be more open to use of supplementation or additional medication to relieve your fatigue. I'm glad to hear your scan shows stable mets--at least you are getting some good out of the treatment!0 -
Curveball, the thing is that my onc is regarded as the leading guy in bc and bc research in this small country. It would be very difficult to get a second opinion without leaving him entirely and the hospital I attend. I am nervous about leaving him0 -
@Aoibheann, I can understand about being nervous to leave your doctor. Has he given you any reason for non-treatment of the side effects? Or maybe, even if he is the leading researcher, he's not the right doctor for you. If you can't get into trials anyway, does the fact that he is a research leader really have any benefit for you in terms of treatment? It just seems so strange to me that he is unwilling to treat your SE, especially if you will be continuing with taxol. I hope you can find some relief for them. (((hug)))0 -
Ugh! I was trying to keep my hair on until Thanksgiving. I have a dinner invite and didn't want to get a bunch of questions about cancer, but the itching was driving me wild and rubbing my head to try to stop the itching was making bare patches so it would have been obvious to everyone that something was up. I tried to go to bed but couldn't stop scratching so I finally gave up, undid my braids and finger-combed the loose hair out. Now I'm nearly bald but my head still itches like mad. I will wash my head tomorrow morning--will that stop the itching?0 -
Good Morning Curveball.
The itching was terrible for me, but then again I had a chemo rash that was quite bad. It is just now clearing up, and I'm going to have weekly treatment #8 this week. I shaved my head after treatment #4 due to the rash and so much hair loss.
Even though I have had this cancer since 2009, this is my first chemo. So the few people that did know kind of forgot, and it wasn't the topic of conversation. Now, with chemo and the bald head I'm finding people do tend to talk about it a little more quickly. But, I've gotten good with responses. If someone asks me "How are you". I say "I'm fine. How are you?". And put the spotlight back on them. I give short answers and always redirect to them if it is at a time I don't want to talk, or I am talking with someone that I don't want to talk about my health with. I find most people get it and don't ask more than they should. And if they do I am blunt. "It's Thanksgiving. I am not talking about cancer today". I figure if they are going to make it all about me, then it is all about me. And if I don't want to talk about it I'm not going to. I'm not rude. But I am to the point.
I also found that using a baby shampoo with no scents is easier on my scalp. You may want to try something like that before you shave your head if you want to keep your hair. Best wishes to you.0 -
Thanks for writing back YamaMama. My head is less itchy this morning. I don't have any baby shampoo. I think I will just rinse it with warm water and no soap. Do you put any kind of oil or lotion on your head? The rest of my skin is very dry. I am not going to shave my head although I might ask my mom to cut the few remaining hairs off short if they don't come out in the shower.0 -
hi curveball, one of the girls told me about the wonders of coconut oil! The one at Cosco is organic, very large and $18.00. I used it and still do from head to toe every day. Saved me with the torturous itchy scalp! You can put it on several times a day and it takes about 5 minutes then disappears in your skin. My daughter eats it in food and it fries better than olive oil, haven't done that yet...its good inside and out and apparently if you google, it there's lots of talk about losing weight adding it to your diet. I just smear it everywhere. Jo0 -
Curveball, I use the same Oil of Olay for sensitive skin on my head as I've used on my face for years. Though, when my rash was bad I didn't use anything for fear of making it worse. I've read that coconut oil is great for the skin. I may have to get some to keep on hand for cold weather and the dry skin I always get this time of year. Due to my rash I'm afraid of introducing anything I shouldn't for now. I didn't shave my head close, but kept it about a quarter of an inch all over. I didn't want to irritate my scalp anymore than necessary. Just about all of that fell out too...it's very sparse now. Yama0 -
Try Aveeno for very dry skin. My son gets extreme skin rash on his hands every winter but Aveeno (it is oatmeal base without perfumes) clears it up and doesn't burn. He tried all the other lotions and they all burned when applied because of the perfumes and other ingredients.0 -
just wondered if anyone had problems with a low heart rate while on taxol? My chemo nurse pointed out that mine was quite low the last 2 treatments so they would keep an eye on things. I'm having a fairly easy time on it otherwise so wouldn't want to stop it. Although I'm waiting on scan results to see how things are going anyway. I've got my fingers crossed for no progression.0 -
Shazza,
That's a "wait and watch" situation. I'm sure they did a complete blood panel to check for any wacky levels? Try to maintain some daily exercise, and tell them if you have any untoward cardiac symptoms: dizziness, fatigue (tough call on chemo, right?), sense of pressure in your chest, etc.0 -
I had my PET CT today after 8 weekly treatments of Taxol. My liver is again NED, (the 5 lesions didn't light up). Bones are still a mess, but appeared to have slightly less intensity. The last scan was a Sodium fluoride scan which is more specific to the bones, and really shows bone mets more clearly. It's hard to tell at this point if the bones are better or not due to the different type of scan, which was a great scan for me when I had bone only disease. But since I had soft tissue mets (on a separate CT of the chest, abdomen and pelvis done after the Sodium fluoride scan, due to the huge increase of bone mets) he wanted to go back to the PET CT using glucose. So all in all, good news is good news and the liver looks good. I'm not sure at this point how long I'll continue on the Taxol. The nurses think it's indefinite until I get a clear scan, and then maybe he'll put me back on Hormonals since I still have one or two to try, plus I haven't done Xeloda, either.
Feeling relieved tonight to know this is working....
I can do this. Hoping you all are doing well also. ~ Yama0 -
that's great news YamaMama. I got scan results back too. There's been a great response in my lungs and just a small amount of progression in my bones everything else stable so no new disease. Yay for weekly taxol long may it last.
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has anyone had skin sensitivity on hands with this tx? I have had a few episodes of really fierce itching/tingling that continues for several minutes and then goes away. I asked my oncologist if this could be neuropathy. She did not think so and said it could be skin sensitivity, and that I should avoid soaking my hands in dishwater. I do notice it seems to happen after I have been washing dishes. If you had this SE, what did you do? Will wearing gloves to wash the dishes prevent it?
Dec 16--anybody? I had another of these episodes today. Can anyone suggest something that will prevent the itch and/or relieve it after it starts?0 -
sorry curveball. Can't help with that SE. Hope you have got some relief. Taxol 15 for me today. Just wondering who's just having continuous treatment or are you doing 3 weeks on 1 week off?
I hope you all have a great stress free SE free Xmas. Summer here in New Zealand so we're keeping our fingers crossed for fine weather. I think the forecast is for rain.
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It is summer here in Costa Rica too and I am also wishing for no rain. I am on continuous Taxol weekly. My doctor says until it stops working or becomes toxic. I am having some fingernail and toenail issues. I pray everyone has a trouble free Christmas! Enjoy your family and friends. God Bless
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I am doing the 3 weeks on, one off schedule. I did four weeks the first round so as to have the week off fall on the same week as Thanksgiving, and this is my second week off, so I get a chemo holiday for Christmas too. Merry Christmas! (or other festive greetings as appropriate)
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I haven't been offered the one week off option. Maybe they will be further along.
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My taxol dose has been reduced to once every three weeks because of se. It's keeping me stable so I don't want to come off it but my peripheral neuropathy is getting worse. My fingers are tingling, nails hurt, toes and the ball of my foot are getting increasingly numb.
Did anyone ever hear that crestor (statin) interacts with taxol to exacerbate neuropathy? I read about it here http://www.drugs.com/drug-interactions/crestor-with-paclitaxel-2031-1316-1778-0.html The pharmacy in the hospital say there's no evidence to suggest that it does. However I stopped taking crestor a few weeks ago and I felt that, while my peripheral neuropathy didn't improve, it didn't get worse. I started back on crestor again this week because I'm worried about my cholesterol and my neuropathy is definitely worse so whether it is a coincidence or my mind is playing tricks on me I don't know.
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@Aoibheann, is there some other drug you can take for your cholesterol? If not I hope there is some other chemo you can take that keeps you stable but doesn't have an adverse interaction with the crestor.
@ShazzaKelly, I have given up trying to understand why oncologists use different schedules, even with the same drug. My first chemo was CMF and there seem to be even more "recipes" for that than for taxol.
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Today I had my last weekly Taxol. I had a total of 12 treatments, and my oncologist feels my scans were good enough to try hormonals again. My liver once again appears NED. The bones....are much improved as well. I did well on them for over 4 years, so, I'm on to Faslodex. I'm cautiously hopeful that it will continue to hold back the cancer for a while again. And since I am stopping it before it stops working, Taxol will be in my arsenal for a later time and need.
I'll be honest and say this hasn't been a terrible chemo for me other than the increasing neuropathy in my feet and a little in my fingers. I am a little nervous about stopping it, but ready to find a new normal. That new normal is a moving target isn't it?
Hope you all do well, and see improved scans soon. Though I haven't posted too often, I've appreciated the support. I've kept my nails, and I believe that is because I've kept them heavily painted and away from light.
Thank you again...and best wishes....moving on to the Faslodex thread. Yama
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i start taxol next week this will be my first chemo anything i should no like side affects
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ok Taxol ladies, I am having numbness and soreness in the fingernails, tips of fingers and toenails, toes. My big toe bled and oozed clear stuff starting a couple of days ago. Do I need to mention it at chemo on Monday? I hate to stop Taxol as I have only had 14 weekly treatments. I think they will scan in another month. Should I hang in there or tell them? thanks for your help. Kathy
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ok Taxol ladies, I am having numbness and soreness in the fingernails, tips of fingers and toenails, toes. My big toe bled and oozed clear stuff starting a couple of days ago. Do I need to mention it at chemo on Monday? I hate to stop Taxol as I have only had 14 weekly treatments. I think they will scan in another months. Should I hang in there or tell them? thanks for your help. Kathy
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Mrs. Rockytop,
You do need to mention it, but only because they can offer you some meds to treat the side effect. Neurontin is very effective at mitigating this sort of neuropathy. Be sure to wear loose, comfortable socks and shoes to reduce pressure on your big toe. A lot of us have found that heavy nail polish can keep our nailbeds from getting sore, acting as a sort of sunscreen.
If the neurontin doesn't help, you might try icing your fingers and toes during treatment to keep those areas from taking up as much Taxol as surrounding tissue. It is a pain in the rear, but effective. I did it by taking ice packs in a cooler to treatment, and using them on and off as comfort dictated during the infusion. Ask your nurses if they have access to icepacks you can use (our office didn't).
Hope this helps.
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I did use the heavy nail polish and just this week after 12 weeks of treatments when I removed my polish (as I do each week to check my nails.) I found my toe nail had turned black around the nail bed. It's not sore, but I imagine it could get sore if I lose the nail. I'm glad to be done with taxol, but won't hesitate to keep it in my arsenal for a later date since I had such a good response to it.
Now hoping the fatigue eases up soon....and that I will get some feeling back in my toes. I'll continue on the neurontin until it does I'm sure.
Good luck Mrs. Rockytop. And yes definitely tell your doc and nurses.
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Mrs Rockytop, I really think you should tell your doc and nurses. You may need med to treat/prevent infection. I use Sally Hansen's 'Miracle Cure' as a basecoat to help keep nails moisturised before I used dark nail polish. I also use lots of handcream. I'm on lyrica for pain relief and it has had no effect on my neuropathy.
Just wondering if anyone has had any weird, unusual sensations in their face? Sometimes my face feels as if the flesh is separating from the bone or other times like when the blood drains from your face just before you faint. This feeling can last for hours. Also my face occasionaly has a tingly sensation and feels fizzy and distant when I touch it. This isn't quite the same feeling as the neuropathy in fingers, toes etc. I thought it was caused by taxol but I haven't seen anyone mention it. Maybe it's a se of pain meds...
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I knew I could count on you ladies. Thank you so much. I will get it checked tomorrow when I am in for chemo and will let you know what they say. It is getting uncomfortable to even type. Blessings all, Kathy
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I have had no facial symptoms at all.
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well, no chemo for me this week. Strong antibiotics for my badly infected toe under the nail. I don't have to do labs on Friday either so we may try to sneak away for a little vacation during this break. I think my body will enjoy the break and maybe my hands and feet will feel better. Blessings everyone, Kathy
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